As part of a campaign for Rare Disease Day on February 28th, 2021, we collected reports from those affected. Here are some stories written by those affected. Those affected with a symbolic picture are known to us personally. However, to protect their privacy, most use a pseudonym. Below we have compiled further reports from affected organizations from abroad or affected people who are not in contact with the association.
#100stories - 100 PSSD, PAS and PFS stories
PSSD reports from our partner organizations abroad and from those affected who are not in direct contact with PSSD assistance
PSSD Canada
- James, Canada, PSSD for 4 yearsParent of a PSSD sufferer, Canada, PSSD for 1,5 yearsShawn, Canada, PSSD for 8 yearsEllen, CanadaEmily, Canada, PSSD for 1,5 yearsChris, Canada, PSSD for 16 yearsMark, Canada, PSSD for seven yearsAndrew, Canada, PSSD for 2 yearsJake, Canada, PSSD for 12 yearsJesse, Canada, PSSD for 6 yearsTiffany, Canada, PSSD for 4 years
Patients around the world
- Erica, Australia, PSSD for 3 yearsDan, USA, mild PSSD for ~4 years, severe for 3 months after re-prescriptionAbel's storyMarc Reinsdorfer, GermanyCarlos, SpainAlex, USARobert BellLuca, ItalyDeya, EgyptAntonio, ItalyLora, Italy (text audio file!) KeshaScott, USA, PSSD for 9 years